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FACILITATING IMPROVED END-OF-LIFE CARE
Session 258, February 14, 2019
Allison L. Weathers, MD, FAAN
Assoc. CMIO, Cleveland Clinic
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Allison L. Weathers, MD
Has no real or apparent conflicts of interest to report.
Conflict of Interest
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• Background
– Why is this conversation so essential?
• Cleveland Clinic’s journey
– Our recommendations
– Our approach
– Our lessons learned
• Your journeys
– Where are you in the Advance Care Planning (ACP) journey?
– How did you get there – team, project plan, process?
– What did you wish you had known starting out?
– Advice for others?
– What do we want EHR vendors to realize?
Agenda
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• Identify the necessary roles that should
comprise an ACP module implementation
project team
• Formulate an ACP module implementation
project plan, including timelines, deliverables
and training and communication needs
• Recognize what components are necessary to
include in an ACP module and how to take into
account local and state regulatory and legal
requirements in their design
Learning Objectives
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Source: NEJM Nov 30, 2017 and NY Times
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“It always seems too early until it is
too late”
• 60% of people say that making sure their family is not
burdened by tough decisions is “extremely important”
– But 56% have not communicated their end-of-life
wishes
• 90% of people say that talking to their loved ones about
end-of-life care is important
– But only 27% have actually done so
• 80% of people say that if seriously ill they would want to
talk to their physicians about end-of-life care
– But only 7% report having had an end-of-life
conversation with their physicians
Source: The Conversation Project National Survey 2013, CDC
Theconversationproject.org
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Cleveland Clinic Center for End of Life (EOL) Care
Advance Directives
(AD) for every adult
Goals of Care (GOC)
for seriously ill
Book Clubs
EOL GR
“The Pause”
Respect patient’s
preferences
Foster caregivers’
resilience
Improve family
experience
GOC Meeting
Standardization
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Cleveland Clinic Recommends:
• Healthy
• Non-seriously ill
• Seriously ill
– Non-critical
– Critical
• Dying
Advance Directives
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Cleveland Clinic Recommends:
• Healthy
• Non-seriously ill
• Seriously ill
– Non-critical
– Critical
• Dying
Goals of care in the EHR
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• Partnership between IT and operational
stakeholders (End-of-Life Center)
• Met regularly for 9 months
• Heavily utilized subcommittees
• Started with our vendor’s base build
• Tried to adhere to it wherever possible
– Justified it when we couldn’t
• Validated all decisions with legal team
Our Approach
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Project Team
• IT
• Center for End of Life
• Pall Med
• Bioethics
• Oncology
• Nursing
• Legal, HIM, Compliance, Risk
• Case management
• Patient Experience
• Center for Healthcare Communication
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Advance Care Planning Activity Needs
• Visible from all contexts
• Accommodate multiple types of providers
• Provide conversation guide
• Enhance
– Multidisciplinary communication
– Coordination of care
• Quantifiable for research and quality
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ACP Activity Needs
• One single location for
– Advance Directives
– Spirituality
– Prognosis
– Understanding
– Goals of care/values/wishes
– Collaboratively plan
– Code status discussion
– All resultant documentation
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Challenges
• Legal, compliance, ethical concerns raised
– Health Care Agent
• Differing policies/regulations across the
health system
• Legally vs non-legally binding documents
• New note type needed
• Getting the word out
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Our Build
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Header
© 2019 Epic Systems Corporation. Used with permission.
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Surrogate Decision Makers
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Surrogate Decision-Makers
© 2019 © 2019 Epic Systems Corporation. Used with permission
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ACP Documents
© 2019 Epic Systems Corporation. Used with permission.
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OTHER ACP
DOCUMENTS
Not yet vetted or invalid
ACP Documents
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Care Manager AD Assessment
© 2019 Epic Systems Corporation. Used with permission.
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Spirituality
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Goals of Care
©© 2019 Epic Systems Corporation. Used with permission.
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Goals of Care - Prognosis
© Systems © 2019 Epic Systems Corporation. Used with permission.
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Goals of Care - Understanding
© 2019
© 2019 Epic Systems Corporation. Used with permission.
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Goals of Care – Wishes and Values
© 2019 Epic Systems © 2019 Epic Systems Corporation. Used with permission.
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Goals of Care – Wishes and Values
Systems © 2019 Epic Systems Corporation. Used with permission.
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Goals of Care – Wishes and values
© 2019 Epic Systems Corporation. Used with permission.
Systems © 2019 Epic Systems Corporation. Used with permission.
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Goals of Care – Shared Plan
© 2019 Epic Systems Corporation. Used with permission.
Systems © 2019 Epic Systems Corporation. Used with permission.
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Code Status
Systems © 2019 Epic Systems Corporation. Used with permission.
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Periprocedural Code Status Discussion
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ACP Notes
© 2019 Epic Systems Corporation. Used with permission.
© 2019 Epic Systems Corporation. Used with permission.
© 2019 Epic Systems Corporation. Used with permission.
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• Issues with right roles/contexts seeing the
activity
• Even if did have it, couldn’t find it
• Even if can find it, aren’t using it
• Should we try to have it be all things to all
people?
Our Challenges Post Go-Live
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• How do we get providers to use the tools?
• Patient driven – better integration with the
patient portal
• Perinatal preferences for pregnant women
• Jehovah’s Witnesses preferences
• Organ donation support
Our journey is far from over…
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• Where are you in your ACP journey?
• How did you get there?
– team, project plan, process
• How did you communicate / educate and what
have you done to get buy-in and adoption?
– Have you been successful?
• What do you wish you had known starting out?
• Advice for others?
• What do we want EHR vendors to realize?
Essential Conversation
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Even if I am dying,
until I actually die,
I am still living.
Paul Kalanithi
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Acknowledgements
• Silvia Perez-Protto, MD, MS
Director, CC End-of-Life Center
• Ellie Blogna
Analyst, ITD
• Diane Petersen
Administrator, CC End-of-Life Center
